Hi guys. I was hoping I could get some thoughts. Sorry if it ends up being long- I'll ad a summary at the end.
I was told I have Palindromic Rheumatism a few months ago towards the end of summer. At the time I was mostly suffering with fatigue, but had started to develop some mild joint pains almost exclusively in my knees (some in fingers and elbows) and was suffering with a rather annoying issue in my leg where it was painful and getting numb-ish sensations and both legs feeling weak like they were having to carry a lot more weight than usual.
I'm assuming that was my first "flare" and after that things settled down to some intermittent aches and pains.
We decided on no medication because my pains are manageable and not damaging. Didn't want to be taking meds with potentially nasty side effects when I don't need to.
Recently though I have come into what I am assuming is another flare and it's different. Started off with me feeling more fatigued again, getting more aches and pains and the odd hot flash/ feverish moment. The aches and pains have now become more wide spread which I assume is quite normal, but the bit that confuses me is I am getting pain outside of joints or limbs. Main culprits are my ears and abdomen. They behave like my joint pains though- come on suddenly then go away in a short-ish time with me feeling totally fine in between. Today I had a handful of episodes where I got a bad enough pain in my abdomen that I had to stop what I was doing and grit my teeth to get through it. Only lasted a few seconds to a minuet each, but they were worse than any of my other pains.
I have called my doctor a few days ago because at first I thought the abdomen pain might be a UTI. They asked me to do a urine sample and gave me a short course of antibiotics just in case. I haven't heard back about the test so I assume it's clear.
I was wondering if it would be worth me having a talk with them about my condition though or possibly asking to see my rheumy. I'm not sure if this is a change in my condition that I should get checked or if it's just my PR coming in fully since it's pretty new.
My doctors aren't exactly the most understanding about my health and I haven't seen them since getting my referral. There is one at my surgery who seems a bit more understanding, but he's difficult to get to see. I don't know if this is worth me going through all that fuss for or if I'll just be told it's to be expected and hush up. And if I do decide to see a GP I don't know if I should just talk with them or ask to see my rheumy. I can't help but worry it's a sign that my immune system is becoming more blood thirsty and things are progressing into a different, potentially damaging, condition.
Newly diagnosed. In second flare. Different to first and includes pain outside of joints. Do I see doc?
Thank you so much for any responses. I am quite lost with all of this.